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Julian's Story
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Name: Julian Phillips
Age:
52
# of years in pain:
28 yrs, 2 months
Cause of Condition: Dislocated Rt Ring Finger due to Water Polo Accident
Diagnosis: RSD
Pain level before finding pain management solution: 10
Pain level after finding pain management solution: 10
# of doctors visited before finding pain specialist: 15
Julian’s Race Against Pain before Pain Management: Extreme pain hypersensitivity
Julian’s Race Against Pain Now: The same but tollerable
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This is a very long story so will try to keep my usual long winded self in check to keep it as short as possible. Back in 1982 at the tender age of 24 I was playing in a water polo tournament when I deflected the ball which in turn pushed my finger back and to the right dislocating it in the process. At the time other than it hurt like.....and swelled I thought that it was not going to be a real problem so strapped it to the middle finger and played on. After 2 weeks of agony I decided to have it checked out to be told that it was severely dislocated. The ER Doctor put it back in position told me to keep it strapped to the middle finger. The following weekend I played water polo for the last time ever. After many shots, splinting etc. the Orthopedic Surgeon I was seeing in the UK at the time decided that the only option was surgery. I was told that not only was the finger dislocated but the tendons and ligaments were torn off and had wrapped around the nerve. A short time after the surgery I started to get the most unbelievable burning and excruciating sensitivity in the finger. After a few months of this the surgeon went back in removed a growth on the nerve. A short time after this surgery it all started again. After several more surgeries the doctor decided to remove the nerve, artery and vein down the left side of my finger. It all started over again so it was decided to remove the finger. By now you have probably already guessed what happened it all started again but now the pain, burning etc moved to the little finger. By now I was totally convinced the problem was in my head that I left it alone for several months. However it got to the point where I would drop cold bottles of milk or if a cold metal such as a knife touched the finger or other areas in the hand I would literally throw the knife out of my hand in a reflex motion. My wife became very irritated with me when I would sometimes throw knifes or forks etc across the dinning room especially if we were out to eat. My very young children could not touch my hand thus after several months of this I decided to see a new surgeon who performed another surgery. The day after the surgery the surgeon came to see me and asked me why and how I had put up with this for so long. He told me that he removed a growth 1" x 2" from a tiny nerve and could not understand how I had put up with what he considered must have been horrible pain. When I told him it was because I thought it was in my head he told me that the only thing in my head must have been just pure stubbornness and that I had to be completely mad. Well the relief from not thinking I was going crazy was immense but unfortunately it did not take long before the pain was back with avengence. This new surgeon told me there was nothing more he could do and so I went down the road of blocks, acupuncture and many other treatments both traditional as well as not so traditional. All to absolutely no avail. Then I was sent to the leading surgeon in the UK who handled these kind of problems and more surgeries moving nerves around, burying them in different bones. Ending with a surgery suggested by an American doctor from John Hopkins who my English surgeon asked me to visit for help. So what started in my finger was now all the way up my arm to just below my elbow. In 1991 we decided to move to Florida in the hopes that the warm climate would allow me a better quality of life and I vowed never to go under the knife again unless it was a mater of life and death. But as you all will probably understand the pain and everything associated with it eventually got the better of me and so I decided to go for the SCS trial which did indeed help. So to the permanent percutaneous SCS. I now had some where in the 40%-50% range of relief from the pain but there was still to be another surprise for me which was that the doctor placed the IPG right on my belt line and so started a whole new set of problems where by my belt/pants etc cause such discomfort and pain that wearing pants is not just uncomfortable but extremely painful causing burning and extreme sensitivity in fact it can be so bad that I actually envy women because they can wear dresses and I cannot. A couple of years ago the original SCS battery gave out. By this time we had moved from FL to PA so onto a new doctor who replaced the IPG and convinced me to have it moved to just below my ribs, I would not allow it to be placed in my butt where he wanted to put it because I could not face the thought of not being able to sit or lie etc. The new position although it gives me problems is infinitely better than the old one. Of course I am now left with an arm that is horrible to be polite a side/waist that is nasty and an area just below my right ribs that is uncomfortable just in the name of now about 40% reduction in pain in my right arm. But without this the amount and type of drugs that I would require to get through life would mean being like zombie which in my view would not make life worth living. Now in 2009 my scs has started to malfunction to the point where it will have to be replaced and this time I will have the paddle type placed which will hopefully help the other side effect of moving my neck and sending shocks/spasms down various parts of my body. The one thing I have learnt is currently my options are limited to the SCS with less pain meds giving me tolerable pain and modest brain function or no SCS and more pain meds resulting in no brain. On the bright side I am alive and still able to work and enjoy my children and now their children. I continue to stay true to my mantra that "pain builds character" which is what I used to tell my friends then the boys I used to lead on hiking expeditions in the mountains. Of course if this is genuinely true then by now now all of us who subscribe to this site would have more character than we would know what to do with. God Bless You All
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